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Privileges For Me but Not for Thee

There has been much confusion over the past week over what the rules are for people living in long-term care facilities.  This has made it very hard for residents to plan for the holiday season.   But today (Dec 22nd ) at 6:00am, we were told that we are not allowed to leave the building except for medical appointments. And if any of us disregard this rule, we need to get a negative PCR test before we can return.

Now for people who have a home to go to where they can wait up to 72 hours for those test results, that is no problem   But for the many people like myself who do not, we would be homeless for 2-3 days.

It is infuriating.  People who live outside of long-term care facilities or other Institutions – including the staff – are able to go about their days and even attend parties of up to 10 people.   It is blatant paternalism and infantilism towards people with disabilities who live in long-term care.  We are autonomous human beings and these decisions should be left to us. 

This idea of privileges for me and not for thee is misguided paternalism. And it must end.

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I can’t believe I have to write this… But here we are

Hello humans. I’m afraid I have a little bit of lecture/PSA for you today. The people who read this blog probably do not need it but my hope is that by putting it down on paper so to speak it will be shared to people who actually do need to hear this message.

Often when I am out, people say things to me that they think are compliments but are really not. Some examples are: “It’s so good to see ya out” “you’re such an inspiration“, “I’m proud of you.“ Or my favourite and I mean that with the most heavy layer of sarcasm I can muster “I don’t know how you do it, if I was in a wheelchair I’d kill myself.“ Yes these are things people have said to my face not just anonymously over the Internet, these are people I do not know. In what universe is it OK to come up to a complete stranger and tell them that if you were them you would kill yourself? The weird thing is they think it’s a compliment! It’s not a compliment, it is actually extremely harmful. I have dealt with suicidal ideations in the past and hearing things like this does not help! What I hear when I say this is; what, I am so tragic and bad that I shouldn’t even want to be alive? It’s not being in my wheelchair that makes things hard, it’s the fact that I live in a world that refuses to accommodate me based on something that I cannot do anything about. What’s hard is having well intentioned people say horrible things that make me want to scream and yell but I can’t because I have to be an educator. Next time you want to say something like that to somebody just don’t do it. It’s extremely horrible and makes us want to punch you in the face. Sidenote: I would never actually punch someone in the face.

Another misconception I seem to get is that I am constantly reliant on my parents for everything and that I don’t have any friends outside of the ones connected to my family. Yesterday, when I told the CCA I was going to a play with someone she asked if my parents were picking me up, I said no I was taking the bus. She looked at me like I had six heads when I told her I was going to go on the bus by myself. She then asked if my friend was a family friend. At this point I got really frustrated and said rather harshly, no I have friends and I am a grown ass woman who is 30 freaking years old I don’t need to run to my daddy for everything! Let me reiterate that I am 30 years old and that makes me a bloody adult! Would you ask a non-disabled individual these types of questions if they are 30? No, probably not so don’t do it to me please.

I don’t have much more to say on that in particular but here is a list of other things you should not do if you were interacting with someone in a wheelchair:

Don’t lean on the chair without permission. That’sI can’t believe I can’t believe like leaning on someone’s shoulder who you don’t know. It’s creepy and weird.

Do you not assume somebody needs help and then do stuff for them . You can ask if someone needs help that’s actually really nice but if they say no leave them alone! Also if they do you need help, ask how you can help them instead of just assuming you know the best way to do so.

If you want someone in a wheelchair to move ask them, do not simply move them out-of-the-way by grabbing their joystick or pushing their handlebars. People have done this to me several times throughout my life. It is degrading and rude. It would be the equivalent of you pulling a stranger by the arm to get them to move. That is obviously not acceptable.

If you want to ask somebody with a disability a question, ask them not their able-bodied companions. I can speak for myself thank you.

I could go on forever but I have stuff to do this afternoon so I’ll just offer this last one. Do not freaking pet me! Do you know how many people freaking touch me on the head like a dog? It’s a freaking lot and I hate it if you do it to me you will be told off because I am not a freaking dog!

So in summary, disabled people are people! Treat them the same way you would any other human and if you think something about them that you wouldn’t say to an able bodied/neurotypical person keep your damn mouth shut! Thanks, talk soon, love you!

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Thank you So Much! I Literally Owe You My Life.

Hello humans! Here’s the deal. I have a lot of feelings about this whole moving thing and I don’t see my therapist until the 13th so I’m writing this all down and you’re coming with me.

 

 On the one hand I feel fucking ecstatic because I and many other people have been fighting for this for a very long time in some cases decades. On the other hand I am getting a swanky condo on the south end paid for by taxpayers while there is a housing crisis.

I was not expecting anything as nice as what I’ll be getting honestly. I expected a basic bachelor apartment with slightly bigger rooms to accommodate my wheelchair and my other mobility equipment. What I’m getting looks like something Carrie Bradshaw would live in. Which don’t get me wrong, I’m very happy about it but I feel like I don’t deserve it when there are other people who work very hard full-time jobs and can’t afford the basics they need to live. I know I worked really hard for this but it almost seems like overkill. How do I justify this when people are literally starving on the street!? The only way I can think to do that is by using the tools I’ve been given to fight for the right for other people to have the same opportunities. I promise with everything I have that I will fight every day to make sure that I am worthy of these opportunities made possible by the taxpayers of Nova Scotia. You’re paying my bills so it is my job to make sure you don’t fall through the cracks either.

A few weeks ago a woman reached out to me on Facebook to tell me about a problem she was having. She then apologized because she felt that since it wasn’t a housing issue it wasn’t my problem. Let me make something very clear, if you are a person disabled or not and you are suffering, that is my problem and I will do everything in my power to make it right or to reach out to people who can make it right if I cannot. I don’t care what time it is, whether it’s the weekend or a holiday. If you need help and you think I can provide it, message me. I may not get back to you right away but trust me I will take care of it to the best of my ability. The taxpayers of this province have given me a gift. The least I can do is help you in return.

Anyway, that’s all I had to say, have a nice day!